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Nonspecific interstitial thickening with groundglass opacitiesLung Health | Last Active: Aug 21, 2020 | Replies (20)
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Replies to "@fracturedd-Hello again- NSIP, Nonspecific interstitial pneumonia (NSIP) is a rare disorder that affects the tissue that..."
Reread what I wrote, I was just writing to empathize with their frustration & share what I have. Most people on here are sharing their conditions & questioning what is going on with them. It is not a forum to call down & shame someone. Was definitely not diagnosing someone, just asking them to look at what I have & if they are suffering in the same way. Don’t run people off, we need each other. Misinterpretation & ignorance of what someone is trying to share is frustrating as well. You are very knowledgeable and share such helpful information, I appreciate that from you.
I had juvenile scleroderma that burned out many years ago. I was officially diagnosed with nsip in 2004. At that point the damage was already done. So I do not take any medication for my lungs, I do take vitiman, eat clean,use essential oils to help with breathlessness, and practice yoga. I have ct scans once a year to make sure the disease isn't progressing and do walk tests ever six months. I stopped doing pft's because I they are so uncomfortable for me. I was only at a 30% and my activity level just doesn't match that number. So my advice is early intervention with a great pulmonologist to help prevent any further damage. This is just a nutshell of my experience living with this disease.